The Will Herndon Research Fund at Beyond Batten Disease Foundation
Our goal is to SAVE WILL and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help today!
In 2009, Missy and Wayne Herndon founded The Will Herndon Research Fund (HOPE) to raise awareness and support for research into finding a cure for juvenile Batten disease. This effort began in honor of their son, Will, who was diagnosed at the age of 6. This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declined cognitive skills and seizures. Imagine blindness, Alzheimer’s and Parkinson’s diseases all rolled into one. Batten disease has proven to be fatal, often by the late teens or early twenties.
When the Herndon’s journey began, virtually no viable research existed. They partnered with Beyond Batten Disease Foundation in Austin, Texas, and brought a team of researchers from Italy to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, to focus on a treatment for juvenile Batten disease. Initially funded with a $2.5 million grant, it represented the largest investment ever made in the history of Batten disease research. After numerous experiments and diligent analysis, this team presented the Batten community with a significant medical breakthrough – a treatment that slows the progression of juvenile Batten disease. At this very moment, it is undergoing FDA-required validation studies, with a goal of being approved into a clinical trial.
These studies are expected to last until late 2017 and projected to cost $3 million. Securing funding for this this project and successfully entering clinical trials, would mean that Will and the many children who need it most, would receive that treatment! And, HOPE researchers would gain valuable, much needed time to focus on finding a cure.
In the years sine Will’s diagnosis, Missy and Wayne have never been filled with more HOPE than they are now. They are in an intense race against time, relying on the prayers and support of family, friends and a generous corporate community. Thank you for visiting The Will Herndon Research Fund. Please continue to explore this page and see the many faces of HOPE at fundraising events that occur year-round. Join our HOPE family and stay up to date on all activities by adding your email address in the box to the right.